Juni Mac’s Extra Special Heart & Chromosomes

Juni Mac’s Extra Special Heart & Chromosomes Juni’s Journey- Juniper was born premature with Down syndrome & a congenital heart defect.

05/21/2026

🪻 Juni Mac — Day 92 Earth Side 🪻

Junie had a wonderful cardiology appointment today. Her cardiologist presented her surgical case to the team of surgeons at Nationwide Children’s Hospital, and all agreed that she is a strong candidate for a two-ventricle repair rather than the single-ventricle pathway that had previously been a concern. This is exactly what we had been hoping and praying for.

Junie’s growth and weight gain continue to go well, and her surgery is tentatively planned for August 2026.

We are so grateful for all of the prayers, encouragement, and love that continue to surround our family. Watching Junie keep overcoming obstacle after obstacle has been incredible, and we feel truly blessed by how well she continues to do. She keeps knocking everything out of the park. 🤍

05/15/2026

Welcome To Holland
by Emily Perl Kingsley
Copyright©1987 by Emily Perl Kingsley.
All rights reserved.
Reprinted by permission of the author.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.”

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

05/01/2026

Juni has her Nikes on … my baby marathon runner …
🪻 Juni Mac day 72 Earth Side 🪻

What looks like “just being a baby”… is actually the equivalent of running a marathon every single day.

1. A baby with a congenital heart defect uses significantly more energy just to breathe and circulate blood — like running uphill without ever stopping.
2. Feeding isn’t “just eating.”
For her, it can burn as many calories as she’s taking in — imagine trying to refuel while running a marathon.
3. Her heart works harder to do what a typical heart does easily —
like completing a full race… just to maintain baseline.
4. Babies with Down syndrome often have lower muscle tone, so every movement takes more effort —
like running with added weight.
5. She doesn’t get long stretches of rest —
her body is working hard even in sleep, like a runner who never fully leaves the course.
6. A simple cold, extra gas, or a rough feeding day can be the equivalent of
hitting mile 20 with no water left.
7. And still… she shows up every 3 hours, every day,
fighting, growing, and pushing forward —
stronger than most of us will ever have to be.
I’m her biggest fan girl- she’s the star of the show everyday, and we couldn’t be more proud of her 💗💫

04/23/2026

Infant Echocardiogram
🪻 Juniper Mac — 64 days earth side 🪻
I’d give anything to take her place.
I’d give anything for her story to be a little different.
I find myself feeling a quiet jealousy of moms whose babies don’t have heart defects — not in a malicious way, just in the way only a mother could understand. I’d like to enjoy Juni more and worry less. It makes me physically nauseous knowing my daughter has to walk this path… and yet she does so with nothing but strength, while I tend to be angry.
We took Juni for her final echo before surgery (unless something changes). Her cardiologist said they likely won’t need another — they were able to get very clear imaging.
There were no major changes. She still has mild to moderate regurgitation of her valve. For now, we wait another month or so to hear back from Boston Children’s Hospital. Then her cardiologists and surgeons will come together to decide how to move forward and what surgery will be best for Juniper.
We are still hopeful for a two-ventricle repair — it’s not guaranteed, but we hold onto that hope.
The visit went well today. Juni was calm and relaxed. But that doesn’t change how much I hate it - hate that she has to go through any of this… or how much I wish I could protect her from it. She is so sweet and innocent.
I try to remember to be thankful everyday. I thank God for every snuggle and kiss. She is here and we get to love her. We love her so much it hurts.
We are thankful for the medical procedures available and the medical professionals that are doing everything they can to keep her safe and healthy. 💗

04/19/2026

Little baby in a fish tank 🧑🏻‍🍼🐟
🪻 Juni Mac day 55 Earth Side 🪻
This real was too cute not to replicate.
So glad you’re out of the fish tank little girl 💗

04/19/2026

Little baby in a fish tank 🧑🏻‍🍼🐟
🪻 Juni Mac day 60 Earth Side 🪻
This real was too cute not to replicate.
So glad you’re out of the fish tank little girl 💗

04/18/2026

chd, T21) 🤍

🪻 Juni Mac — 59 days earth side 🪻

Juni takes medications four times a day. It sounds like a lot, but it really isn’t. She takes Lasix twice a day to keep excess fluid at bay, a medication for constipation, a vitamin with iron, and gas drops.

Our biggest goal right now is safe, steady weight gain to prepare her for open heart surgery. She drinks expressed breast milk fortified with high-calorie supplements for premature infants to help her grow.

Fun fact — babies gain weight more easily in the womb than they do outside of it. So even if mom has breastfeeding goals, many babies need additional calorie support to “catch up.” On top of that, Juni has a super fast metabolism because she’s always working harder than everyone else in the room — breathing and pumping blood with her unique heart.

This is what our 8am and 8pm routine looks like. She gets her lactulose at 2pm and 2am because I try not to load all her medications at once — her belly is so little.

Our long-term goal is to get rid of the NG tube, but it will likely be around until after her heart surgery, when she has more energy from a stronger heart to eat without tiring out.

She eats on a strict schedule — 8 feeds in 24 hours (every 3 hours). That means waking her at 11pm, 2am, and 5am. Eventually, as she grows and can take more volume, we’ll be able to drop one or two of those overnight feeds.

One step at a time. 🤍

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Zanesville, OH
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